The IBD Registry can provide a comprehensive infrastructure for research partners through its Web Tool, which is currently being used in over 60 sites. The Web Tool is a relatively low-cost and flexible system. It can be updated with research specific data fields directing clinicians to capture the information required.
Data captured as part of a research partnership will inform service standards, clinical guidelines, quality improvement and assurance programmes. The Registry Web Tool is currently facilitating two research projects:
Anaemia Service Evaluation (ASE): This project is a joint working initiative with Pharmacosmos, and aims to evaluate the level of service IBD patients receive and how they are treated. The study will gather data on 100 patients with IBD. Iron levels will then be monitored over 12 months to determine how well iron deficiency anaemia is managed in this cohort of patients.
The UK Vedolizumab Real Life Experience Study in Inflammatory Bowel Disease (VEST) aims to gather outcomes data on vedolizumab in a real-world clinical setting. Hospitals across the UK are currently participating and the study is open to new sites. Eligible patients have to be adults who are due to start vedolizumab in standard care. Data is obtained from the patient’s own reported outcomes, clinical assessments and the medical notes including disease characterisation, medications, previous history and blood test results.
Dr Keith Bodger describes how the IBD Registry can be used for Research
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